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Hi all..just wondering if there's a problem with the site right now or if it's just my computer. None of the avatars are showing and the emoticons aren't working. Is it just me having problems? I've gotton so used to using the avatars to ID people that I'm having trouble keeping up with who is who when I'm reading posts right now! Guess I've gotten spoiled!! Love to you all! Well good grief!! The second I posted this the avatars were back!! Soooo..nevermind!! Okay..I spoke too soon...apparently I'm only seeing the avatars and posted emoticons when I'm actually logged onto the site...Is this new?

Oh Nina!! I'm sorry you've been feeling so crummy!! Those steroids don't sound like much fun...hey at leaste or Mighty Mouse can "fly" without the use of her cape today!! I had two...yes two root canals done yesterday ...another one scheduled for next Tues. so I'm with you in the "no fun" department right now!! I hope your body starts to settle down soon!

Welcome home sweet Melissa!! We missed you!

Just wanted to wish you luck for tomorrow!! It sounds like the clinic knows their stuff...I really hope they can give you some more answers and help find a good treatment plan. As for the driving part...is a taxi service an option for you? I know that drive is a couple of hours...maybe the clinic can suggest a service? Keep us posted!!

Congrats Persephone!! I'm so happy and excited for you!! I know you've been through the ringer and yet here you are...scholership and all...it's just so fantastic!!!

Hey guys...just posting an update on my dental saga. Had my first apt. today and everything went FINE...yay!!! Although it turns out I'm going to need 3 root canals OR 2 root canals and an extraction. My dentist cleaned out 2 of my teeth today and decided to leave them open, put me on antibiotics, and send me to the endodontist. So, most of these 2 root canals has already been done and the jury is still out on my poor broken tooth. I had NO trouble with the Carbocaine numbing agent, however it did wear off really quickly (30 min.) and even with repeated shots I never got fully numb again. Now it could have been the area the dentist was working on...I think I've had issues with this part of my mouth even when I could use novacaine I remember having to have lots of shots before. But at leaste I now know what to expect! So, moral of my story...don't be afraid of the dentist!! Get those teeth checked and catch problems early so you won't ever be in my position!! Thanks for all of your support and encouragement...it helped me so much!!!

Wow..that's spooky!! I'll have to pass this along to my friends and family...thanks for the laugh Sophia!!

Thanks for the update Michelle. Melissa, Hang in there girl..I know you've already been through so much..it breaks my heart that you're now having to deal with this! As always..you are in my thoughts and prayers.

Hi all...well I've really gotten myself into a pickle now...I've been putting off going to the dentist for 2 yrs. now (even with when my fillings started falling out left and right). I always had an excuse...I'm too sick...I don't have the money...I'll just wait a little longer... Well, I finally lost a very large filling and decided I could no longer put off the dentist. I went for an eval. last week and wasn't surprised to learn that I need 1 poss. 2 root canals and several fillings. I was coming to terms with that this weekend when low and behold 1/2 of a tooth simply broke off at the gum line!! Now I might have to go to an oral surgeon for an extraction and I'm really freaking out!!!! It just makes me so sick that b/c of my fear I've let my teeth get this bad. I never had a problem going to the dentist prior to POTS...I've had a lot of work done over the years and it used to not bother me. But now that I can't have the novacaine with the epi. I just don't know what to expect...and I'm shakin' in my boots. I did a search and read prior posts...I know that they can use the Carbocaine to numb me up...but now I'm scared that I'll have some sort of weird reaction to the freakin Carbocaine . I KNOW I'm being dramatic and I keep trying to calm my body down but it's just not really listening to me!! I've been so tense these past few days...I just can't seem to relax. I swear...I went through SURGERY this year and I don't remember being this scared!! I go in for a cleaning this afternoon and the dentist is going to eval. the broken tooth...I'm schedule to start work on another tooth on Wed...any good thoughts you guys could send my way would be much appreciated!

Hey Diz..just a thought...have you ever had a sleep study done? Or been tested for MG? I hope you find some releif soon!!

I wear contacts too...I use the acuvue 2 disposable contacts. I've been wearing disposables for years now...I leave them in for a week or two then let my eyes "breath" then put in a new pair. I have had trouble with the solution they are stored in...I have to rinse them in my opti free express rinse before putting them in my eyes or I'll have lots of stinging pain etc. For the most part I haven't had any trouble with my contacts but I do remember several years back trying one of the more "breathable" (for lack of a better term) types and I had lots of difficultly with blurring and wattery eyes ect. That's why I use the acuvue 2...they're not as flexible and hold their shape a lot better so I don't have problems with them moving around, tearing, or bunching up like I did with the others. My advice whould definately be to try rinsing them in different solutions before putting them in and see if that helps...and if that doesn't work then maybe try a different brand or type of lens. I took me a lot of trial and error over the years to find a combo. that works for me. Good luck!

Cool pics. Nina!! We have those humming bird moths here...they love our butterfly ginger plants. They are really neat..they fool me every time I see them...they look so much like humming birds when they're in flight. The spider comments crack me up ...every time I see a spider in my house I think "Oh my gosh..it's a brown recluse!"...just can't seem to help myself! We actually had a neighbor who had gotten bitten in his sleep and the exterminaters found a nest under his house..so now I'm jumpy around all spiders!!

Thanks for pushing this one up again Dionna!! I was about to post a question myself! I've developed one of those deep painful "pimples" on my chin...just like emily described...and I have no idea what to do untill it finally comes to a head so to speak. It hurts like crazy!!! I'm lucky in that I usually don't have acne and when I do it quickly goes away. I searched for acne info. on other sites but all they list for tx. is the otc topical stuff..would that help when it's still so deep? Any other suggestions on how to make this bugger less painful? Help!!

Just a thought...have you signed up for the "meet others" program through DINET? It basically gives you contant info. for others in your state and surrounding areas. Perhaps someone participating in the program could give you some advice as far as a doc. in your area. Not everyone is active on the boards especially in the summer so they may have missed your posts. I also agree with Lauren in that you may just have to open the phone book and see what you can find. I would start with the specialists others have already suggested...it's also good to check local medical colleges with hospital affiliation...med. schools are usually up on the latest disorders (even the so called "rare" ones). If you still have no luck then the only other answer would be to travel to a specialist IF you HAVE to have your dx. confirmed. It seems that you are pretty sure of whats going on with your body...have you tried the non-medical treatments listed in the "what helps" section on DINET? Perhaps you could find a GP in your area that would be willing to learn about POTS and start you on some medical tx. Pretty much all of the medications used to tx. POTS were put on the market for other disorders so most docs. should be familiar with the medications even if they aren't familiar with POTS. I hope you find what you are looking for.

If you're in for a bit of a drive..my doc. in P-cola is really good..he specializes in dysautonomia. You can find his info. on the physician's list...I hope you find someone soon..sounds like Alexia has some good referrals!

Yes...a lot of folks with dysautonomia are approved for disability..if you do a search you'll see that although it can be difficult it most definately can be done...some even on the first try. I know that Roselover..(I think it was her)..posted about this awhile ago and she listed the actual codes for heart arrythmias that can be used when applying...like the others have said since "dysautonomia" is not an approved disorder you have to use your symptoms. I was very fortunate to have an excellent case worker handeling my claim and was one of the lucky few to get approval my first go around. Good luck with everything.

Welcome home Melissa!! I hope that you start to notice some postivie effects from your treatment really soon. You are in my thoughts and prayers as always. Take care of yourself and keep us posted!

Hey guys..well I went to the doc. to see about this back pain I've been having and she says it's back spasms. I had a nice little knot b/w my right shoulder blade and back bone. Had x-rays done and everything is fine with my back itself...so now I'm going to a PT to work on my muscles. At first I thought I was still having pain from my gallbladder surgery b/c it was in the same area..but now I just don't know. My PT says I don't have much muscle tone left in my back and we are going to focus on stretching and strengthening...so far I haven't been able to do much and actually had to cx. for today b/c my back is one big cramp right now (had a bad spasm yesterday for no apparent reason). I'm doing the heat thing and trying to move as much as possible...but was wondering if any of you have had experiences with this before? Can we take muscle relaxers with POTS or is it a no no ? I really don't want to go the medication route anyway but I was curious just in case this starts to become a chronic problem for me. Any advise is much apprectiated!

Hey Em..I was wondering if you've thought of contacting the manufacturers of Ambien and seeing if they could help? I may be missing something...are you trying to get the cost of the drug covered? If so..don't some drug companies have programs in place to help individuals that can't afford the medications or don't have insurance coverage? It may not apply here but I know I've seen articles were some of the major drug companies claim to have programs for those that can't afford their medications...I know that ambien is not a life saving drug but it sure does play a large role in your quality of life so maybe the manufactuer would help. I hope you get something worked out soon!!

Melissa, I'm so glad to hear you insurance has backed down!! I will be thinking about you and praying that the treatments are successful!

Hey guys..I was just wondering for those of you with GI issues (celiac and IBS, etc.) do you ever get back pain/discomfort? I had my gall bladder out a couple of mths. ago and I'm still having GI probs. and now my back is aching along with my abdomen and I feel so bloated all the time. I'm thinking it's time to get tested for celiac sprue even though I don't have the tell tale symptom of fatty stools. I see my POTS doc in a couple of weeks but might go to my GP sooner...I'm just so tired of being so uncomfortable all the time. Still lots of irritation in my right upper ab. from the surgery which doesn't help .

Way to go Carmen!! I'd love to check out some of your songs...is there anyway we could read/hear them? I think it's okay to post a link..it not could you pm me one? This is so awesome...I'm so happy for you! Oh...what type of music are you writing?

Only 1 hour 15 minutes to go!!!!

Hey guys..just a friendly reminder that DINET's auction on e-bay only has about 19 hrs. left!! It seems to be going well so far but I'm surprised there haven't been more people bidding...we have 800+ registered members and only 22 people have placed bids so far...maybe everyone's waiting till the end? I know that alot of us are on limited incomes and may not be able to bid but what about family and friends? Please spread the word if you haven't already!!

Rebecca, I'm sorry you had such a rough time with the tilt...I agree with the others that you should get the actual test results and seek out an autonomic specialist. When I had my initial testing my results were simular to yours in that my HR went up 26-27 bpm not the full 30...I was told I had an "a-typical anxiety disorder" and should go on paxil. Fortunately, I had heard of another specialist in my area and decided to give it one more shot...he felt there was definatley autonomic involvement and had me do some more testing and low and behold I am a textbook POTS patient! The problem lies with the interpretation of these tests...some doctors just refuse to look at the whole patient. It is obvious that you have mulitple symptoms that could most definately reflect POTS..so please seek another opinion! I also wanted to clarify...in order to be dx. with POTS your HR goes up by 30 bpm. and/or HR stays at or above 120 bpm....Your blood pressure can go up, down, or stay the same...the dx. is all about the HR not bloodpressure!! I hope you find some help soon!